Most people with POTS suffer from venous pooling, AKA blood pooling in their legs. It is painful! Imagine yourself jamming items into a bag. The bag stretches and stretches, and it gets heavier and heavier. In the case of venous pooling it is a similar situation. More blood is pooling in my legs than they were meant to hold. It is quite painful. I think perhaps the pain comes from my skin and muscles trying to accommodate all of the extra volume, much like that bag trying to accommodate more items than it was meant to hold. It also feels like someone strapped three pound weights to each of my legs. Each step feels heavy, as though I am walking in water up to my thighs. I know three pound weights aren’t much, but they are when I’m fatigued, my legs are already in pain, and I didn’t choose to put them there! Then there’s the appearance of venous pooling. My feet turn bright red and, after about 5 minutes or so, the veins begin to bulge. It’s not attractive. My legs aren’t the only place I feel the venous pooling. All of that blood being trapped in my legs by the pull of gravity means the rest of my body isn’t getting enough blood circulated to it, including my brain. Trust me, life is much more difficult when your brain isn’t getting enough blood!

So this is why I don’t understand why so many people with POTS choose not to wear compression stockings.Edit: I don’t want to create insensitive non-sickies, so I want to insert here that some people don’t wear them for good reason. For example, my grandpa needs them to help with circulation, but his legs do not respond well despite correct sizing. They swell up. Some people (see comments) will faint from just the tiniest bit of extra warmth.Some people cannot get them on without assistance. Okay, resume your reading. 🙂
I used to be one of them. When they first put those silly hospital ones on me (real ones aren’t really anything like those), I hated them! I begged people to take them off of me. No one would except my fiance, Jake. Then I realized… They’re not very comfortable, they’re not fashionable, and they can be hot, but none of that is worse than the pain and negative effects of blood pooling. Even if I can deal with the pain and extra weight in my legs, what about my organs not getting adequate blood supply? What about our blood pressures dropping from trying to compensate for venous pooling? Our bodies struggle enough and I feel we owe it to them to help them out where we are able. Exercise is one way to battle venous pooling, but that’s not always possible on a regular basis for the chronically ill. There’s rarely a time you can’t wear compression stockings. You don’t have to actively do anything except tolerate them. Check out my pictures below. See what a difference they make?

Here’s my experience with them
First off, I’m not going to lie to you. They are tight, but not intolerably so, especially if you get a good brand. They are expensive ($80.00), but they last around 6 months when worn every day. That is 44 cents a day to avoid all of the awful things that come along with blood pooling. They can be warm. This is nice in the winter, but not so much in the summer. They can be cute and look like tights, but there are times when I really miss my bare legs! At first, they can be tricky to get on, but I now can get each on on in about 8 seconds. I really was opposed to wearing them when the doctor suggested it, but I will be the first to say they work wonders.

I wear thigh high 20-30 mmHg compression stockings. I’ve heard of people wearing higher or lower levels of compression. I put them on first thing in the morning before getting out of bed and take them off in the evening before my bath. Every once in a while, I take them off early for a treat, but only if I know I will be laying flat the rest of the evening. I do not wear them swimming or to bed. I really dislike wearing them outdoors in the heat, but I avoid being outdoors in the heat anyways because I have severe heat intolerance. Indoors, I do get a little warm sometimes. I battle this by sitting with a fan directed at me. As for the compression, it took about a week to get used to. I really don’t notice it anymore although it always feels good to get them off. When I exercise my legs, I take them off. I exercise horizontal to the ground, so blood pooling shouldn’t be a major issue. Also, I have no proof for this idea, but I feel like my legs have to do more work if there aren’t stockings there helping them out with circulation. The sooner my legs look like the Hulk’s, the sooner I won’t have to wear compression stockings all day everyday!

The only brand I’ve liked is Jobst. In my opinion they’re the softest. I really like the black opqaue ones because they just look like tights. The sheer type tend to be very reflective in areas, especially in pictures. At the level of compression we need, they will never be truly sheer. Don’t expect them to look like your natural skin tone. They just won’t which is a bummer, but so is venous pooling! People won’t notice they’re not you’re skin unless they’re paying attention. At a glance, they won’t notice something amiss. I love my open toe ones for the warmer months because I can still wear flip flops.

I should add the picture without hose was in the evening with indoor lighting and the one with hose was in the afternoon with natural lighting, but I don’t think that makes them look any more/less red.

I have compression stockings, but due to medications and being stuck in bed so much of the time, I’ve gained weight and my knee high compression stockings roll up and slide down my leg. I need to get some of the weight off again so I can wear them–but that’s hard to do when life is spent in bed. Ugh. I have pictures of the pooling in my feet and they are purple… and I was not up for long before I took the picture. It freaks people out to see how dark they get!

It’s pretty funny because I was the girl thinking “I’ll wear these stupid stockings for a few weeks just to show the dr they don’t work” and here I am almost a year later blogging about how helpful they are!

I have severe heat intolerance with my dysautonomia (to the point of shaving my head because hair is too hot- even short hair). I wear ice vests when I leave home. I don’t care what they look like (at this point, I’m glad to be alive- dysautonomia is only one challenge). But any temperature issues, and I’m out cold on the floor. I’ve also had only one side become red, while the other is ghastly pale- no differences in clothing or ambient temperature (i.e. an arm out a car window). Dysautonomia in all of its forms is a strange bugger.

It is a strange bugger! I know so many absolutely cannot tolerate compression hose. That’s why I was saying I don’t understand people who choose not to wear them because of mild to moderate discomfort. In your case is sounds like your body chose for you!

Yeah- I wish I could wear them. Since having chemo, the autonomic stuff is getting worse. Pain is another trigger of mine, and it’s to the point of causing pre-syncopal symptoms when I bring the groceries in from the car (I live alone, and don’t really have consistent support… one friend here- and she’s really sweet, but she works and has a family). My dad is 80- and while he’s healthy, he’s not the best grocery shopper in the world. He freaks out too much that I won’t like what he brings home. Like I’m in a position to be picky- LOL 🙂 I figure I’ll be in an assisted living facility by the time I’m 60 (another 10 years give or take a few months). 😦

Jillinois and I are in the same boat there. Like her, just a SLIGHT increase in temperature, and I’m hitting the ground, or, at least getting such bad pre-syncope I can’t function. And unfortunately, while those stockings are beneficial to many, for those of us with significant heat-intolerance problems (or in our cases, non-cool intolerance!!), they’re rough!

I know they work for so many, including you, and I’m glad 🙂 I SO wish I could beat this heat-intolerance business and wear them.

I hope it helps ! I can’t go to any appointments without mine- the light in the dentist office gets really warm, and it seems like every doc I see has west facing windows in the lobby- so it’s like a greenhouse. I even use mine in the winter when I have to go to the store, since the increased activity gets me too warm… and I leave my coat either in the car or in the ‘seat’ of the cart.

Christine and Jill, I edited my post and inserted a little blurb about people like you guys who would love to wear them, but can’t. I don’t want family/friends who read my post harassing people such as yourselves who would benefit from compression hose, but are unable to wear them! Thanks for the comment as it reminded me to include a little disclaimer. 🙂

I wonder if there is something you could put on your legs that would cool them in situation where it’d make a world of difference to have stockings — like shopping. I wonder if they make those thin pads you can stick on your skin but are cold instead of hot… Hmmm… cooling compression stockings: million dollar idea.

I just go out in shorts with my horribly weird legs, no matter what the temperature (I’ve been known to go to the store in 45 degree temps in shorts and a t-shirt). I figure I look less weird vertical in strange clothes than I do lying on someone’s floor with UNWANTED ambulance people looking at me when I wake up !! I’m nearly 50 years old- I have the advantage of having no fashion expectations whatsoever !! 🙂

Thanks for the brand recommendation! I get a lot of dizziness / lightheadedness / ringing ears / darkening vision while doing things like standing to prepare meals, wash my hair, or walk around supermarkets. We’re heading into winter atm and I spend most of the cooler months wearing black opaque tights anyway, so I was planning to try out compression stockings and see if they make a difference.

Let me know how they work out! People really cannot believe my black compression hose aren’t normal tights. They’ll never say the same thing about the nude ones, but I’ll take what I can get! I put on normal tights a few months ago, and I almost tore them because I pulled them up so hard from getting used to the stockings. 😊 I’ve had good luck with compressionstockings.com or amazon. Just make sure you look up how to measure to see what size you are. It’s really easy but if you wanted, many pharmacies can measure you.

It is totally worth a try! Until I wore them a few weeks, I would have said I didn’t have blood pooling. After getting used to them, I began to notice when I got up in the evening without them on, my legs felt so heavy. Another way to figure out if they’re helping is to take your blood pressure and pulse with versus without them. I hope they help you out!

Soooo, my first pair of Jobst just came in the mail. Oh. My. God. Any advice for putting them on without having your heart rate through the roof and cashing in all your energy for the day!? It just took me half an hour to get one leg up and it was more exercise than I’ve had in a long time! They are only 15-20 mmHg. Eek! 😉

I promise it gets easier! It is very difficult at first. It used to take me minutes to get them on and now it only takes seconds. I will make you a video if necessary. 🙂 Scrunch them in your hand so they’re all kinked up and your thumbs are on the inner part at the foot. Then stick your foot in and PULL!! At the heel, I kind of down and backward (toward my back) motion to pull it over. From there, with practice and using the scrunch method, it is smooth sailing. Getting over the heel is the worst part (for me anyways)!

Sorry to hit you up again ~ do you pull the thigh-high Jobst to the very, very top of your thigh, right under your butt? I’m worried they are going to pinch blood down rather than holding blood up. Wow, these are seriously uncomfortable. My ankles hurt! Thanks for the help!~

I’m sorry your ankles hurt! My thoughts would be to make sure there are no wrinkles because I know those always hurt on me. I pull them all the way up my inner thigh to where the thigh starts to go in again and turn into lady bits. 😉 I think wherever feels comfortable is fine. If they’re digging in too much, I wonder if maybe you need a size up. Mine definitely leave red indentations, but after a few days, didn’t hurt. They definitely hold blood up, but they can also cut off circulation if they are too tight. It is an annoying balancing act.This is a little scattered as I just got back to the hotel… but I wanted to answer you ASAP. 🙂

Thank you so much for your response. The stockings were marginally easier to deal with today. I don’t feel any different with them on except one of my feet goes tingly like it has no blood and my heart rate seems higher AND lower – more variable, I guess. I did all the careful measurements you described, so it should be the right size, but if they don’t stretch out slightly, I’ll see if I can budget enough money for another pair. Thanks for all your help!!

Oh no! Something interesting…. heart rate variability is good I have learned this last week and a half (it should vary by up to 20 beats, higher when we inhale,lower when we exhale) and is a sign our heart is working in time with our breathing which is a sign of autonomic health. However, if it is just beating high and low whenever it wants, that is no good!

Anyways, back to this darn stockings. It really sounds like they are cutting off your circulation. Some people cannot handle them all of the time, or at all. Do you have blood pooling issues if you’re resting? Have you considered just wearing them when you will be in a position (for me that’d be sitting with feet on floor/standing/walking) where blood is likely to pool? Maybe your blood flow is a happy camper when your legs are up and the stockings are cutting off circulation, but would be beneficial when you are upright and blood starts trying to pool down there.

Please, please just say “I have no idea” if you have no idea. I’m worried you will do research or answer at length, but I’m just looking for off-the-top-of-your-head advice from someone who has tried a few. It’s too much money to just buy blind. Thank you!!!!

New update: now I want Juzo opaque and, guess what? They’re $91. I give up. Maybe I’ll just stick with my ugly-beige-on-sale-too-long ones that I already have! Please don’t waste energy answering my long comment. Hopefully someone reading this will be helped by the brands I’ve named and it’ll all be worth it! 😀

Thanks for another great article!
Is there any way to make a pair of pantyhose looser at the waist? I’ve tried on like 10 different pairs and found one that fits, except that the waistband is too tight. If I cut out a slit on each side of the band, could I sew in triangles to make the waistband looser, or will the stockings run? They were only 20 dollars so I’ll probably just go for it and see (I’m awful at sewing though, so it should be interesting 😉 ).
Also, how do you wear your thigh highs without blocking the circulation? If I put a band around my leg, it’ll bruise for a while. I guess that’s just a POTS thing.

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